This April, Celebrate Sarcoidosis Awareness Month
From taking part in a virtual endurance challenge to joining in a virtual cooking class, to watching several speaker presentations, advocates are set to mark Sarcoidosis Awareness Month, observed each April. World Sarcoidosis Day will be celebrated on April 13.
Awareness and education are crucial to increasing the recognition, diagnosis, understanding, and management of this rare disease, according to the Foundation for Sarcoidosis Research (FSR), which has several events planned.
Sarcoidosis, with fewer than 200,000 cases diagnosed annually in the U.S., is a rare disease marked by an overactive immune system. It leads to the formation of certain inflammatory cells in different tissues and organs, affecting how well they work.
The FSR already has several activities underway to mark the month, including its first Steps for Sarc virtual endurance challenge and fundraiser.
“To raise awareness and unite the community during April’s Sarcoidosis Awareness Month, FSR will be hosting a month-long virtual endurance and fundraising challenge!” the foundation says on its website. “Our goal is to amplify our message and connect sarcoidosis warriors around the world.”
Starting April 1, supporters are encouraged to walk, run, step, or hike to collectively complete nine million steps — the equivalent of 4,500 miles. The goal is to raise $25,000 to help fund FSR’s research and education programs. Event details and registration information are available here.
A discussion of sarcoidosis and related interstitial lung diseases will take place on April 10. Cheryl Bradford, an FRS patient advocate and navigator, whose sarcoidosis caused scarring in her lungs, will share her experiences with the disease in a “SarcSocial” live virtual networking event from 11 a.m. to noon EST.
A 90-minute Wellness Series on April 12, starting at 1 p.m. EST and featuring psychologist Meghan Kennedy, MD, will focus on how to manage the pain and fatigue experienced by people living with sarcoidosis. Participants will learn some of the causes of these burdensome symptoms and practical ways to lessen their effects.
On April 17, FSR patient advocate Trina Massey-Davis will share her story about how changing one’s mindset can affect life with a chronic disease. Discussion topics for the presentation — titled Fostering Growth and Resilience — will include “Understanding Where Your Focus Is,” “How to Keep Your Focus and Get to Where You Want to Be,” and “Building a New Normal.”
Also on April 17, FSR will present its first nutrition education and cooking class. The organization’s chosen recipe will be sent to registered participants in advance so that they can make the treats at the same time. The “Let’s Eat!” event will feature Sydney Axelrod, senior dietician at the Mount Sinai-National Jewish Health Respiratory Institute in New York.
As part of Awareness Month activities, FSR will hold a virtual Memorial Monday Candlelight Vigil on April 26 to honor those who have died from sarcoidosis. The hour-long webinar will feature a special tribute presentation and speakers.
For the month, supporters also may download social media tools and change their Facebook profile frame to spread the word about sarcoidosis. An informational toolkit for patients also is available.
April 13 is World Sarcoidosis Day, and FSR is hosting a virtual networking event full of trivia, stories, and more. Advocates are asked to wear purple gear, take a selfie, and post it on social media using the hashtags #WorldSarcDay and #StopSarcoidosis. Supporters also will have available a printable World Sarc Day sign to hold up for their photos. The sign leaves room for supporters to declare why they celebrate World Sarcoidosis Day.
“#WorldSarcDay is an opportunity for the sarcoidosis community to unite around disease awareness and showcase the potential of what can be done to advance the mission — stop sarcoidosis,” the FSR states in its announcement. “Join FSR in our journey to continue providing resources for patients and funding crucial research.”